http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1356
Fri, 29 Feb 2008 20:11:18 +0000PunBB 1.4.2http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6792#p6792
I have been where you both are...it is very difficult. We only want the best for our loved one and we do not want to just give up....keep up the fight. I did not give up until my dad said "Its enough, just let me sleep". On the last hospital visit, the dr want to do dialysis. I asked if it would work, she said its not guarantee....I just could not put him though more pain and misery just so I could talk to him every day. I had to pray about it...if dialysis would save his life, I would have did it in a heart beat. But the dialysis would have been hard on his body also becaue he was so weak. I loved my dad dearly, and missing his very badly. Its not a day, a hour that pass that I do not think of him. I am wondering if I made the right decision in refusing dialysis, however, I read over some recent records I got from his house, and there were other issues going on I was not aware of. I am very disappointed how my father ended up....I think if he had additional help, he would have been here. He did not pass from cholangiocarcinoma in my opionion...I encourage you to keep up the fight. Don't give up!

celoi (Charlene Eloi, daughter of David Cook)

]]>Fri, 29 Feb 2008 20:11:18 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6792#p6792http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6785#p6785
Hi Michele,Sor sorry to hear about Tom. making the decision on whether to keep going is so tough. My husband Joe who is almost 68 has been doing alternative til now but now he has severe jaundice which they are going to try and relieve today. The problem is, that is only the symptom. The tumors are growing and he never wanted regular chemo because of the side effects. Now we have to decide is it worth it to try conventional or stick with IPT which gives him quality but maybe he is getting immune to the treatments. Like you we have to take one day at a time and ask for God's wisdom and strength in what to do next. Joe is not in any pain which is a blessing and he also doesn't have any itching which would be the second worst thing for him. I will pray for you and Tom today as I sit in the waiting room at the hospital. I am so glad for this website where we can share our hearts without burdening our kids and friends. I try to be strong but my dreams are filled with sobbing and falling apart.We can all hang in there together and know we are not alone in this fight. God bless you and Tom. Mary Anne]]>Fri, 29 Feb 2008 12:51:19 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6785#p6785http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6782#p6782
thank you everyone who posted. This is the most difficult time in our life as it is in all of us who live with this disease. Colleen -I will email you privately, you too are often on my mind. This journey keeps producing hope in the toughest of times doesn't it? Betty, am not sure how you can keep up with the sadness on this site after your loss.Re the IVC filter -this was done a year ago, but the filters are lower than the liver, and if the CC produces clots in your liver the filter is useless. My husband is feeling stronger today, so a little hope returns, but the doc did give us a reality check, the chemo has such little effect on this monster, and takes such a toll. So now we need to regroup and figure out where to go next...This site has given me so much during this awfull time. Thank you all for keeping it going.]]>Fri, 29 Feb 2008 05:50:16 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6782#p6782http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6772#p6772
Michele - My heart just breaks for you. I am so sorry to hear of the troubles Tom is having. I feel like we have come so far together sharing our trials and tribulations. Unfortuneately we are now both coming so close to the end, yet still hope it will never come. Please know that you and Tom are in my thoughts and prayers. Please keep in touch. - Colleen]]>Thu, 28 Feb 2008 14:43:39 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6772#p6772http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6771#p6771
This was so heartbreaking to read. My DH is also 62 and suffering from one complication to another. Pardon me for being so blunt but did you mean that the clots would be a more "kind" way to pass on ? If so, I can understand your thinking along those lines.

If you want to continue the fight, did your doctor meantion a vena cava filter? These are often used in patients who tend to throw clots, are easily inserted in interventional radiology, and serve as a filter to catch clots before they get to the lungs. Perhaps there is a reason why this would not work in in Tom's case.

No matter what you decide, I have come to learn that there is no wrong decision in this journey. You have always done your best at the moment and will continue to do so.

Best wishes for both of you. I will say a prayer just for you.

]]>Thu, 28 Feb 2008 14:27:54 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6771#p6771http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6769#p6769
So sorry Michele. I know reading this was difficult so writing it must have been horrible. I will be hoping for that miracle for you and some comfort for you and Tom as you face this difficult decision.

Patrice

]]>Thu, 28 Feb 2008 14:11:21 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6769#p6769http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6767#p6767
Oh Michele - this just breaks my heart to read this today; I usually have something supportive to say but I am at a loss for words this morning.Just let him know that you love him and whether you know it or not, you have been building strength all along since this happened in your life and you will find it when you need it. Keep praying for that miracle; you and Tom will be in my prayers.Love Betty]]>Thu, 28 Feb 2008 13:53:20 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6767#p6767http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6762#p6762
I have been reading and posting for a year since my Tom was dx a year ago. He has had 2 chemo treatments and 4 embollizations and countless side effects and emergencies to the hospital. Through it all he worked full time, went on some trips with us, had a son's wedding and a wonderful Xmas. I guess we should feel lucky but it's funny life makes you greedy, you want more and more.Tom has recently been scanned after starting 2nd dose of Folfox as he was gaining a lower extremity weight and feeling punky. The scan shows the tumors ( liver and lung mets) are pretty stable. The bitch of it all is the clots in the lungs. He has had a multitude of clots,obviously not controlled though hypercoagulated on Lovanox,and now they have invaded the vena cava. This is not good and we have to decide whether to let my active, funny loving husband and father of 62 go quietly or painlessly as these clots will permit him...or more chemo for unknown results and horrendous side effects...and for how much longer, if at all? SO I guess the decision can wait another day, tonite I will climb in bed next to the love of my life of 38 years and hold him in my arms while I pray for a miracle. And then I can remember how lucky I was...]]>Thu, 28 Feb 2008 04:53:10 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=6762#p6762